CHOP Family News - Summer 2009 Family-Centered Care

CHOP
Family News
Summer 2009
Building the Family-Care Team Partnership Through Daily Rounds
When Kerri Hanlon comes Kerri’s input was critical when the pain team, a group of
to The Children’s Hospital specialists that tackles the toughest cases, suggested that
of Philadelphia with her son, perhaps Sean’s reactions were “just the way he is.” Kerri
Sean, she brings something whipped out the video of a family trip to the Grand Canyon
special: photos and videos of that showed Sean laughing and joyful. “This is not the way
Sean that show him smiling, he typically is,” Kerri told them.
interacting and having fun.
Different units at the Hospital function differently. There
That way, when physicians on
may even be variations on a unit depending on the focus
daily work rounds ask about
of the care team, how sick the patient is and how close to
her son, she can use the visual
discharge he is. Sometimes the team will come into the room
aids to show what her son is
for rounds. Some attending physicians prefer to hold
Kerri Hanlon and Sean at the like when he’s his usual self.
discussions on all of a unit’s patients in a conference room
Grand Canyon Sean, 11, has cerebral palsy and and then do rounds, where they update parents on their
gastrointestinal issues and is non-verbal. His parents are his voice child’s care plan. Some units are exploring other ways to
and are critical to telling healthcare providers how he’s doing collaborate with patients and families. The goal is the same:
because they know him best. “Since he’s not able to tell them improved outcomes through partnerships between the care
if he’s in pain or how he’s feeling, that falls to us,” says Kerri. team and the family.
“Doctors can evaluate him clinically, but we’re in the best position
“We know that working closely with parents enhances
to compare his present status to his baseline.”
compliance, efficiency and patient safety,” Ballantine says.
Last fall, Sean was an inpatient for about six weeks following continued on next page
surgery, and the Hanlons were key partners in his recovery. Every
morning Kerri or Brian, Sean’s dad, was present and participated
in the daily work rounds, when the multidisciplinary healthcare
team on an inpatient unit reviews each child’s current condition Fun Facts
and creates the treatment plan for the day.
“This visit we were welcomed and included on rounds,” Kerri
says, “and I really appreciated it. Sean was having severe pain, There’s one important but often unrecognized group of
and they couldn’t find the point of origin. It was critical we were professionals who play a critical role in patient care and
fully included. My husband and I aren’t medical professionals, safety: the highly skilled biomedical technologists. They
but we’re the glue, the continuity in Sean’s care.” keep all CHOP’s medical devices and other complicated
medical systems up and running, and train other staff
Allison Ballantine, M.D., one of Sean’s attending physicians on their proper use. The devices are as big as an MRI
during his stay, recognizes the importance of family participation scanner and as small as an infant IV pump.
in a patient’s care and is at the forefront of CHOP’s move to
include parents in daily rounds. “Their input is invaluable,” In 2008, CHOP technologists:
she says. “They know the unique experiences of the child’s life • maintained 22,348 medical devices located in 196
— in the Hospital and at home.” departments across the Hospital
• responded to 21,737 repair and project work orders
• performed 22,517 inspections
continued from previous page
“The parents have a voice we need to hear. Rounds allow us to Kerri remembers a Pediatric Intensive Care Unit resident who
bring them into the circle literally and figuratively. I want parents started one morning’s discussion about Sean by saying, “Sean is
to speak up.” a lovely 10-year-old with a bright smile, which we haven’t seen
much since he’s been admitted.” Kerri says, “The attending cut
Here are Kerri’s tips for parents:
in and said, ‘Tell me why he’s here.’ No parent wants to hear
• Let the care team know you want to participate in rounds. ‘the patient is experiencing severe respiratory distress,’ but that’s
• Check each morning to see when rounds are scheduled, as the the type of information doctors need to talk about. You need a
exact time can change. strong constitution to listen to all the medical terms, but after
• Be respectful as the team does its job, but be sure to correct all, it’s the medical problem that brought you to CHOP.”
misinformation (for example, you may know something Ballantine concurs. “The level of terminology we use can be
important about your child’s medications, history or condition daunting for families, but it’s necessary for clarity because we
that may not be in the chart). need to understand the patient.”
• Prepare questions in advance so if they’re not answered during
rounds, you can ask them while the team is there. In the decade-plus that Sean has been a CHOP patient, Kerri
has seen more and more examples of family-centered care in
• Don’t be overwhelmed if a dozen people are present. As a action. Being welcomed to participate in daily rounds is the
teaching hospital, CHOP is training the next generation of most recent. “Every doctor tells us, ‘You know your son the
pediatric specialists, and rounds are an important teaching tool best. Tell us what you think,’” Kerri says.
both for clinical issues and to model family-centered care.
• Keep a notebook handy so you can refer back to prior conversations.
• Steel yourself to hear your child described in stark, clinical terms.
The Parent’s Perspective
From the First Moment, Kindness
By Tracey Johnson Hematology social worker, Charles Adams, have been with us
every step of the way. The Sickle Cell Program treats the whole
This was my introduction to the wonderful world of child, the whole family. It begins with education and continues
Children’s Hospital. with top-flight care as the need arises.
I raced frantically to the Emergency Department, my twin When Christian was 3, he developed respiratory syncytial virus,
6-week-old boys in my arms. I told the first person I met,
better known as RSV. After several days in the Hospital, his
the security officer, “I don’t know where I’m supposed to be.
physician told us he would need a blood transfusion. My
I just learned my babies have sickle cell disease, and our
husband, Raymond, and I were terrified. The nurse arranged for
pediatrician told me they’re going to die.”
us to visit the blood bank, where staff
With a kindness I later learned was a explained the whole process: how the
hallmark of CHOP, he calmed me down blood was gathered, tested and stored.
and called Hematology. Renee Cecil, They made us comfortable with the
the sickle cell nurse coordinator, greeted procedure, and we agreed to the
us. Renee sat with us and explained that transfusion. By the next morning,
our sons were not going to die. She gave “C.J.” was running up and down the
me some basic information and set up an halls. The nurses were asking, “Is this
appointment for us to see a hematologist. the same little guy?”
CHOP is extraordinary! We walked in When C.J. was 5, a transcranial Doppler
off the street, and people went the extra test showed he was at high risk for stroke,
mile to help us. Christopher and Christian Christian, left, and Christopher threw out one of the complications of sickle cell
are now 13. Throughout the years they’ve the first pitch of the Phillies’ 2007 season. disease. He would now require monthly
been CHOP patients, I’ve seen this caring blood transfusions, a procedure known as apheresis. Two big
attitude hundreds of times in many departments and from needles — one inserted into each arm — are needed to pull
all levels of employees. out his red blood cells and put in donated cells. It takes three
Our journey hasn’t been easy. But we know we’re not taking it hours each time, so it’s tough on a little person. But month after
alone. Our hematologist, Kim Smith-Whitley, M.D., and the month for the last eight years, the nurses on the Apheresis Unit
News & Moves Around CHOP
CHOP Earns Highest U.S.News & World Report Scores AmeriChoice Contract Extended Through 2011
Children’s Hospital was awarded the highest scores when Children’s Hospital has signed a contract extension with
U.S.News & World Report conducted its annual survey of AmeriChoice of Pennsylvania and AmeriChoice of New
children’s hospitals. Jersey through June 30, 2011. Now New Jersey families
This year, rather than issuing an overall ranking, each hospital insured by AmeriChoice of New Jersey have easier access to
received a “U.S. News score” in 10 specialties. CHOP’s combined CHOP specialists because all CHOP doctors are considered
U.S. News score of 944 is far better than all other hospitals. CHOP participating providers.
is ranked No. 1 in more specialties (five) than any other hospital Adolescent Care Center Adds Evening Hours
and is the only hospital to score in the top three in all 10 specialties.
CHOP’s Adolescent Care Center has added evening hours,
Details are posted on www.usnews.com/childrenshospitals.
staying open until 8 p.m. on Mondays and Tuesdays. The
Choice Is on the Menu at New Food Court Center, at 3550 Market St., fourth floor, also has walk-in hours
for pregnancy testing (Monday through Friday, 1 – 4 p.m.) and
Choices, choices, choices. A huge expansion in the Main Building
HIV testing (Monday through Friday, 9 a.m. to 4:30 p.m.).
cafeteria area now gives your family many more options than before.
For more information, visit www.chop.edu and click on
Do you want barbecue ribs for lunch, smoked on the premises in
“Programs and Services” or call 215-590-3537.
a new smokehouse? How about sushi prepared by specially trained
chefs while you watch? Perhaps you have a yearning for pasta or a New Cardiac Echo Lab Provides Greater Capacity,
salmon burger, fresh off the grill. The new Food Court has them all. More Convenience for Families
There are also Kids Pick menu items, which were given the stamp The Cardiac Center opened its new Echocardiography
of approval by CHOP’s Youth Advisory Council. The Food Court Laboratory in April. The new lab, on 3 Northwest in the Main
is open 6:30 a.m. – 7:30 p.m. seven days a week. Building, incorporates technologically advanced equipment,
builds capacity, and increases families’ comfort and convenience.
On the Move For more information, call 215-590-3540.
Several programs and clinics have relocated to the sixth floor of the
Nephrology Services Now in Voorhees, Springfield and
Richard D. Wood Pediatric Ambulatory Care Center. Visit the sixth
floor for: Amplified Musculoskeletal Pain Syndrome Program, King of Prussia Specialty Care Centers
Biochemical Genetics/Metabolism Clinic, CARE Clinic, Infectious In addition to all the special services highlighted in the Spring
Disease Outpatient Services, International Adoption Health Program, issue of Family News, the Renal Outreach Clinic offers
Neonatal Follow-up Program and Pain Management Program. Nephrology services at CHOP’s Pediatric & Adolescent
Specialty Care practices in Voorhees, N.J., and Springfield
and King of Prussia, Pa.
have done everything possible to make it easier for him. There were refer to the Hospital as Hotel CHOP because they are
days when we both cried. But, the nurses have always been there to treated so well.
wipe away the tears. For me, serving on the Family Advisory Council and
C.J. always jokes that the nurses treated him like a king, and one Family Faculty, where I speak at employee orientation
day they really did. He came in and found they had draped his and help residents understand medicine from a family
chair with a bed sheet to make it a throne. They put a cardboard member’s point of view, are my ways of giving back to
crown on his head and told him he was “King of the Day.” He ate CHOP. It’s also why I’m president of the Sickle Cell
it up! C.J. still has some rough days, and those incredible nurses Parents Network, which works to support, educate and
are always there to support him. He tells me the needles hurt less advocate for Philadelphia-area families touched by sickle
because the nurses make him laugh. cell disease.
Christopher has also experienced some of the complications of I tell those families — as I tell my own children — what
sickle cell disease, including several blood transfusions and I learned on that very first day I came to CHOP: Sickle
multiple surgeries. The twins, who’ll be in eighth grade in the fall, cell disease is not the end of your life. You have the
have a relatively normal life: They play sports, go swimming, disease, but it doesn’t have you. Be positive, think
participate in other activities and have discovered girls. I’m grateful positive and surround yourself with people who can
they have each other to talk to about having sickle cell disease. They provide you with great care. For our family, those people
say coming to CHOP is like getting a tune-up; they affectionately are at Children’s Hospital.
Partners for Excellence
Ideas From Families for Families to Support Healthcare Partnerships
Tips for More Effective Phone Communication
By Paula Finestone • Give your phone number and write down the name and
phone number of the person helping you, in case you get
Perhaps you’re scheduling a routine appointment for your child.
disconnected.
Maybe you’re awake at night with a sick child and need medical
advice. Or your family is anxiously awaiting test results. • So that you understand any information you receive: have a
family member or friend listen in on the call; ask the staff to
In these situations, we rely on the telephone to get information
explain further; or request written information.
we need. Here at CHOP, we’re aware that much of the important,
day-to-day interaction between families and the healthcare team • Repeat what you hear and ask, “Do I have it right?” If the
happens by phone. Effective phone communication can help information is unclear, ask, “Can you say that a different way
build successful partnerships between families and the team, so so I can understand?”
your child can get the best care possible. To help you make the
• Once you and the staff agree on the issue, you can talk about
most of phone conversations with schedulers, nurses, doctors and
the plan to help your child. If you have ideas about what you’d
other CHOP staff, we’ve gathered tips for talking on the phone
like to do, share them.
from experienced families on our Family Advisory Council.
• Make sure you understand the next steps and that they are
Before You Call suitable for your child and family. Find out how soon your
• Get paper and pencil ready. Write down your questions and child is likely to get better, and when a follow-up call, a
important information: your child’s diagnosis, doctor, most doctor’s appointment or a visit to the ER might be needed.
recent weight, medicines your child is taking right now, the
name and phone number of your pharmacy. • Before ending the call, make sure all your questions were
answered. Ask for the name and phone number of the person
• If your child is sick, write down your answers to these
you should call if you have other questions later.
questions: How is your child feeling and acting? Is there a
fever? What have you tried to help your child feel better? After the Call
• Unblock any phone “call blocking” in case you need a call • Read your notes and write down what you need to do next.
back; if using your cell phone, make sure you can receive calls. • Put appointments and dates to call back on your calendar.
Making/Taking the Call • Keep phone numbers near the phone and in your cell phone
• Say who you are, your child’s name, who you want to talk to address book.
and why you are calling. Do you need information, or is your Paula Finestone is a family-centered care intern and a parent of a
child having symptoms? child treated at CHOP.
The Editorial Board of CHOP Family News includes family
members and staff of The Children’s Hospital of Philadelphia.
Comments and suggestions are welcome and should be
submitted to Paula Finestone at finestonep@email.chop.edu.
Receive Family News by e-mail. Go to www.chop.edu
and click on “Sign Up for Newsletters” in the right-hand
column. After registering, select “Family News.”
3025-Summer 2009/5.5M/07-09
The Promise of Partnership
Family-centered Care